Chronic severe nocturnal hypnic headaches

I've been to Stanford headache specialist and Sacramento headache specialist they just want to lock me up and give me psych meds that won't take away my pain

Please help I suffer from hypnic headaches for the last 17 years up to 23 a month with 2 hours of sleep each night I have a headache I wake up with excruciating eye pain I suffer from severe sleep deprivation including hallucinations due to lack of sleep sleep aids don't help headaches burn right through them please help

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
-- https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/

I have chronic hypnic headaches for 17 years up to 23 a month with 2 hours sleep per night including hallucinations due to sleep deprivation please help Tim p

@lwatson612 @jana15 I had migraines but am not really familiar with hypnic headaches, except for what I have read here. Are they similar enough to migraine that they use the same medication?
I really just wanted to comment, that when I was young no amount of caffeine kept me awake, but now I have to steer clear of it in the evening. I don't know if I am typical or if that's just me, but I think for people who are used to caffeine the effect is considerably less.
JK

Melatonin could be worth trying. I take melatonin. I started with 3 mg. but increased with guidance of a headache neurologist. I currently take 15 mg. Do not be concerned with taking a caffeine tablet. Caffeine prevents the headache in some people, also those of us with these night time headaches seem to be immune from the caffeine keeping us awake. The caffeine does not cause us to wake up. I currently take prescription Gapapentin as well as melatonin. It keeps things at a tolerable level of headache activity. Best of luck to your son.

Hi everyone, I noticed most of this discussion is from a year or more ago, but I stumbled across it while researching something that may help my son. It actually took a while for it to occur to me that it was odd that his headaches literally ONLY strike at night while he is sleeping. We have called them migraines, and I just assumed they only came at night. Now I see that they're called something else entirely. The reason I finally realized it was odd is that he started having them so frequently. He is only 17 though, and I understand the onset is always much older, so that is very odd. He first started having them about 2 years ago and then they stopped for a year, and now they are back with a vengeance. He had a MRI 2 years ago and everything checked out normal. His usually hit around 5:30 a.m., though one hit the other night at 1:30 a.m. He did have one after a nap the other day when he wasn't feeling well, but that's the only time that has happened. He has had them "come back" thru-out the day when medicine wears off, but they always strike between 4-5:30'ish. I've recently started giving him Excedrin or goody's powder, and those work better than anything else, though I'll also give him 2 advil if it's still hurting. I'm not comfortable putting him on any preventative prescription, he's still growing and there are just so many side effects. I do have migraines and take Trokendi XR (derivative of Topamax). He saw a chiropractor recently for 7 sessions and we felt like that was helping. They could tell his neck near the base of his head had some issues, the nerves on one side were essentially numb (I'm not using the technical words). He's an athlete and the chiropractor said as the season gets started, he will likely improve some as well, but the adjustments also should help. He said we could need some maintenance but he's hoping that helped. He's had 2 since we stopped. I read that melatonin can help? I also read that caffeine can help and I'm not sure how much would be ideal for a 17 year old, but for those of you using caffeine, I'd like to know if it impacts your sleep? I realize it may be worth it to avoid the headache, but I'd still like to know if it's keeping you awake or causing you to wake up? It seems he is at a very different stage of life than a lot of you, so he may be impacted by it very differently, but since he has to get up for school every morning, I hate to keep him up half the night with caffeine 🙂 I also think lack of sleep may give him a headache sometimes? I'm sure hormones plays into it as well. I'm so sorry that you all are suffering with this and discouraged that it's been so long for all of you...

Wow, after all these years actually finding a diagnosis for these headaches! Reading all these posts was a reflections of my life: I’m 68, female, had migraines since teen years, felt great for a couple of years during menopause then, wham, the nighttime headaches began. I tried everything the neurologist threw at me and some worked for a period of time, until they didn’t. Had scans, sleep studies. Finally relented to their recommendation of Botox about four years ago and am still on it (no longer receiving shoulder or neck injections which has created problems for me). Have also been on Topiramate about 6 yrs. Botox took over a year to kick in, then worked fantastically, not so great the past 18 months. Usually have pain five nights a week, but it’s NOT as bad as before and I sleep with an ice pack every night and put it over my eye/forehead at first indication of pain. Do I like subjecting my body to Botox poison? No, but I also don’t like hanging over a toilet throwing up in unbearable pain either. None of the pain meds worked and the older you get the less my doctors want to give them to you. Some of the new meds on the market remain untested with older women according to reseach I’ve done (which the doctors do Not tell you), and though my Neuro office was really pushing me towards it because their trial run was positive, they now have told me to wait. My very, very, unofficial observation has been that a lot of migraine sufferers have sensitive systems.
I’d like to get off both, shouldn’t be on Topiramate, never should have since I have osteopenia and now osteoporosis in areas. Tried weaning off Botox once and that was a mistake......

@lulu1962 @lisalucier - I started the Prednisone taper on 11 December. 42 tabs 10mg. I'll complete dosing on 22 December. Prior to starting the Prednisone I think the other meds had thrown off the timing of the headaches, so rather than waking me at a specific time, they were more random and not quite as severe, but was feeling generally achy along with a constant feeling of shakiness. I have tolerated Prednisone pretty well in the past, when taken for extreme cases of poison ivy and a lengthy battle with hives following a surgery. This round, after day 2, the headaches completely ceased and I've felt much better with the exception of the shakiness, a little fluid retention and elevated blood pressure. I expect the fluid retention and blood pressure will return to normal after I complete the dosage and, if true to form, I expect a week or 2 of feeling generally lousy while my body takes back over to produce cortisol. I'll keep you posted on what effect it has on the Hypnic Headaches. So far so good. @lulu1962, have you tried any caffeine or melatonin prior to sleeping yet? They worked more often than not for preventing the headache for me...at least while sleeping. Also, I've never taken Spironolactone. Prayers for us all to regain happy healthy lives.

@lulu1962 I took Spironolactone prior to my liver transplant along with another diuretic (I gained 35 pounds of fluid in 6 weeks). I had no problem from it and I was headache prone, but the headaches (migraines) ended with menopause, thankfully, so that is possibly why I didn’t have a problem. Interestingly, my migraines were almost all left sided also. Occasionally, when one was winding down, it would suddenly switch to the right side!
I can almost feel your pain, I hope you find some relief soon. That’s disappointing that the best migraine medications don’t help.
JK